Life with obsessive compulsive disorder (OCD) is a frustrating experience. And not just because I’ve already had to mess with the formatting of this article and fix a spelling mistake before continuing on. That said, although OCD is a horrible and mentally draining illness, one of its downsides isn’t the illness itself but rather the lack of understanding surrounding it.

Growing up, I hid my OCD from everyone besides my parents because I myself hardly understood it and thought others might think I was weird. It got much, much worse as I got older and became harder to contain. Eventually, when I was 21, I started reaching out and confiding in different doctors and my friends. The sad thing is, even with the outreach, I have only met two people in my entire life who seem to truly understand what I go through daily—one being a doctor and the other being my mother, and both of these people have OCD.

At the end of the day, my personal experiences are proof that OCD is misunderstood by many. The thing with OCD is that when it is severe, it is much more than organizing things or being irritated by a crooked painting on a wall. In fact, even though that is how OCD is commonly portrayed, that is either a very mild form of it or just a pet peeve. Unfortunately, severe OCD is excruciating, and anyone who has it can vouch for that.

Through my own experiences, I have learned that OCD is a high form of anxiety, which means that not only do I have OCD but also severe anxiety. For example, OCD causes me to not be able to leave the house some days because I am afraid that something may happen to me, someone I care about, or even a complete stranger. Also, I have to be careful with what I do or something “bad” may happen.

Interestingly, the “bad” things that I convince myself might happen aren’t always even specific ideas but rather just something broad, and they are always irrational.

More specifically, though, these “bad” things can range from a friend dying if I don’t delete a certain text message they sent me to a family member dying because I didn’t tap my fingers enough. The problem with OCD is that when these irrational thoughts come, we cannot simply let them go, whereas people without OCD can. In fact, people with OCD tend to have a very sticky mind, which means that when thoughts come, they stay around for a long time—sometimes hours, sometimes months, and sometimes, in extreme cases, even years.

On top of these irrational thoughts, we have compulsions, which are known as “rituals” by many people in the OCD community. These rituals, which may seem harmless enough at first but eventually turn into a very destructive force, may include tapping a doorknob, washing our hands, or checking the oven before we leave. It can potentially take hours for us to leave the house, and on particularly bad days, we may not even be able to leave at all because we cannot complete our rituals well enough to sate our OCD.

In a clear-cut explanation, the obsession is something that gives us anxiety, a thought that we generally do not want or that we do not understand, and then we start to question ourselves and the thought, no matter how irrational it is. We ask ourselves, “What does this mean?” or “Why do I have this thought?” Undoubtedly, the thought itself is meaningless, but with OCD, it doesn’t feel as such. Once the thought comes, we do our best to get rid of it and the anxiety by doing a compulsion. The compulsions can vary from person to person, but common examples are checking things, and by this I mean checking if the stove was turned off, whether the door is locked, or if the toaster is unplugged.

Once the obsession has been checked, the compulsion has been completed. Now that may help temporarily, but the thought and compulsion will come back, and each time it will come back stronger.

I’ve heard OCD explained as a train and each train car represents a specific thought. When you have a thought, you get on a train and get off at the next thought or stop. With OCD, that stop or thought may be hours or days away because of the stickiness of our brains. It is best to ignore the thoughts and the compulsions and take on the anxiety upfront, as it will save us anxiety in the future. This is much easier said than done, though, and I struggle with it daily.

Intrusive thoughts are also a large, mostly unspoken, part of OCD. These intrusive thoughts can include all kinds of different things, but they are always thoughts that the person with OCD doesn’t want. They can be violent, sexual, or just plain nonsensical. People who suffer from OCD tend to be the kindest people on the planet and have no interest in acting on these thoughts, and that is why when they come, they distress someone with OCD so much. So, if you are someone with intrusive thoughts who has OCD, understand that they are the exact opposite of your values and beliefs. OCD thoughts are not our own thoughts, and therefore they do not represent us or what we stand for.

OCD can come in many different forms and rise and fall based on anxiety levels. It is a vicious cycle because as our anxiety rises, our OCD rises as well, which causes our anxiety to rise more and in turn causes our OCD to rise more. It continues repeatedly until it is at a constant high. I have been there for months at a time, in that sense of extreme anxiety.

Ultimately, it is extremely hard to keep going through those times of high anxiety, but as someone who has suffered from it, I can say it does get better.

It may take a while, and it will be hard, but if you can fight the compulsions, I promise the obsessions will get better. That said, I understand how hard it can be to fight the obsessions, but eventually, if you avoid the compulsions, your mind will start to understand that those thoughts are meaningless because you aren’t reacting to them. If you are someone who has OCD but hasn’t quite gotten to the point where it has ruled your life, don’t let it. Fight the compulsions no matter how meaningless they may seem because, eventually, they will grow into a lion that will devour your entire existence.

I  write this so those without OCD can recognize that it is so much more than the common view would lead you to believe. OCD lacks a general awareness in society, and it is not fully understood by many, even some doctors. OCD cannot truly be understood unless one suffers from it, but I hope that I have shed some light on what it really means to have obsessive compulsive disorder.

OCD is not just an issue with organization, it is something far more insidious that is a daily struggle for those who suffer from it. It is something that can get so bad that it can have devastating effects, such as preventing us from leaving our homes. It is something that needs much more attention in the mental health realm and significantly more research done on it. Obsessive compulsive disorder is not simple nor trivial, and we need to bring its true nature to light.